Have diagnosis now

[eileenet49]

Got a letter from consultant now and it is confirmed that I have alcohol related cirrhosis.

Consultant said

"The key here though is not so much how much scarring there is in the liver, but how the liver is functioning, and on your liver blood tests your liver is functioning pretty well at present. Knowing that you have cirrhosis represents a significant risk for you, however it is not disastrous, if you can achieve and maintain abstinence. Typically patients who have cirrhosis who continue to drink have a between three to five year life expectancy, however patients who have cirrhosis from alcohol and achieve and maintain abstinence have a near normal life expectancy".

So all in all, not so bad. I gave up alcohol back in February when it was first mentioned that I may have cirrhosis, so that was good.

Consultant also said surveillance and follow up will be discussed at next meeting (3rd May) but he's hopeful that with continued abstinence I will have few complications.

In addition though, blood tests have picked up 'very low level IgM paraproteinaemia' (apparently nothing to do with my liver disease) which will be monitored by GP. I'm not really sure what this is but seems to be something to do with blood, will find out more when I speak to my consultant on Tuesday.

I've go my list of questions to ask, it's quite long

All in all, I'm feeling more positive now and, I have to say, a bit lucky.

[Positive001]

Well done, all very positive, make sure you exercise regularly and eat healthily too. 😀All the very best to you.

Laura

[eileenet49 in reply to Positive001]

Thank you. As for exercise, this is a little difficult at the moment as I have put on a lot of weight and have back problems (probably related to the weight). I'm hoping for some advice from the consultant or GPs re this.

I try to walk everyday, I also have COPD.

I'm determined now to sort myself out, I feel I've been given a second chance.

[Positive001 in reply to eileenet49]

Excellent 😀

[Cat-B]

That’s sounds good, eat well ( no salt or processed foods, you really don’t want to get ascites) I had a less than 20% survival at diagnosis and 6 years on my liver function tests are normal, it’s hard work but definitely worth it. Good luck

[eileenet49 in reply to Cat-B]

Thank you, its good to hear positive stories.

[eileenet49 in reply to Cat-B]

What does ascites look like. I think I may already have it. Have had fluid retention for about 10 years but was told it was due to COPD/medication. I've been on 40mg furesomide daily ever since.Because of the weight problem its difficult to tell if my stomach is enlarged but it does feel quite solid and I have started to have little prickly/stabby pains around my waist (or what would be my waist if I had one) area and above for about 2 weeks.

Would ascites have shown on ultrasound?

So many questions.

[Cat-B in reply to eileenet49]

Yes ascites shows on the ultrasound

[Cat-B in reply to eileenet49]

I looked like I was carrying a baby hippo ( first one called Henrietta second one ( bigger) called Henry lol, both were drained during my 3 weeks stay in hospital. They said I would probably need another drain in 4-6 weeks, but by eating a high protein and absolutely no salt, I have never had to go back xx

[Dogbot]

Well done eileenet49 as you know first thing first great news you managed to stay sober it’s tough ,I know . Do try to exercise and watch the diet, I know everyone tells you to eat well and exercise but it’s true. When I was in my teens (that’s a long time ago 🤣) I was very fit then somewhere along the road I managed to become an alcoholic 🙈. Now nearly 19 years later with a lot of medication and some magical doctors and nurses I’m still here awaiting a liver transplant, please don’t go down my road life is great without alcohol ask my long suffering wife who stayed with me bless her. Enough going on good luck in the future and make sure that list your taking to the consultant is long enough they really don’t mind you asking questions 👍.Stay Safe All

Dogbot 🐶🌈Dave

[oap74]

Hi I also was told over two years ago that I had cirrhosis, on my second scan I was told that I had liver cancer which was treated with radiotherapy, then Barrett’s was discovered. I have now been up to the pearly gates Four times and he’s sent me back, with two brain haemorrhages, heart attack and burst Barrett’s, next time I think he will let me in. I don’t drink a lot now but still enjoy a drink on occasions like tomorrow 53rd wedding anniversary, we have been together for 56 very happy years. I’ve put all my affairs in order modified our bungalow to be OAP friendly and easily managed. The hard part for me is the mind is willing but the body isn’t ie a job which used to take a morning now takes a week but I still do it. In our part of the village it’s all older residents and the majority of the over eighties will all say that it’s no fun getting old. Some who 20 years ago were very happy couples are now looking really sad. With all this in mind it really is up to you to decide what is best for you and your family. Wishing you all the best for the future what ever you decide to do. PS I’m just glad that I’m in the departure lounge and not the arrivals ?

[Readlots]

Well done Eileen, keep up the good work

[oap74]

I’ve just twigged why the 49, your the same age as my wife 😡. Enjoy

[pushthrough]

Hello eileenet I’m 39 and was diagnosed with the same this past December. I have to say your specialist sounds very pleasant. The words even gave me encouragement. Let’s live normal lifespans together. I wish I never touched alcohol.

[eileenet49 in reply to pushthrough]

At your age, you have a lot of life to go for. Im 73 so not such. But we should/will do our very best to make the most of it. x

[YummyBear]

Hi, did the letter from your consultant state "Typically patients who have cirrhosis have a between three to five year life expectancy, however patients who have cirrhosis from alcohol and achieve and maintain abstinence have a near normal life expectancy"? I have cirrhosis (through non alcoholic fatty liver disease) but have never been told that life expectancy for non-alcoholic Cirrhosis has between 3 to 5 years life expectancy. I am shocked at this revelation! I will raise this subject with my Consultant at next appointment. I only have surveillance: 2 yearly U/S and 1 endoscopy yearly, plus bloods, seemingly all normal but 7 years on I still have the diagnosis of Cirrhosis. I wish you well.

[eileenet49 in reply to YummyBear]

I'm so very sorry, I made a mistake in my typing. It actually said 'who continue to drink'. I've edited it now. He was only talking about Alcohol related liver disease.Sorry if I caused you unnecessary panic.

[YummyBear in reply to eileenet49]

Phew! Thank you for clarifying! It has made me realise that I need to ask questions at my next appointment. Wishing you all the best.